doctor visits feel like a fight. something always happens. what is your visits like?

[Iamqueenofeverything]

[h=5]Does anyone feel like they "fight the system" everytime they go? I always think things go wil go smoothly but they don't. Here is what i am talking about. i just get so tired of dealing with trying to do everything. My latest appointment i pent 8 hours with medical appointment and traffic. saw a specialist who just told me what I knew which is I need a double lung transplant but not ready now. Even with this had to drag this info out as well as what his role was in the transplant process and what the test results were. then i went to go see my cf doc. Spent almost 1.5 hours trying to get paper work done for x rays which I was told that it should have been done last night and it took 5 minutes to fill out. I was fighting 3 department to get my paperwork done. Each one blamed each other for no paperwork. (Got my parking validated bc I was nice about complaining.) Have to wait for 1-3 hours on the doc. in a way it's a drag but also he spends quality time with everyone and deals with all the issuse a patient has which is wonderful. in the meantimes, i have a nutritonist who gets things done but she was in my room saying that she doesn't know the computer systme and spent several minutes looking stuff up and hitting tabs which never worked.
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[sroeseler]

Our visits are usually a different kind of fight. It does take absolutely all day but both our boys have their visit together. Ours usually seem more like a fight to not be admitted though. It never fails that one of them starts getting some bug days before the visit and they want to jump right to hospital stay rather than try treating at home first. Then the social worker has to come in and try to make us feel like crap for not wanting to put our kids in the hospital and the dietitian giving us crap over a lost lb or two. Then hours later we get a prescription and follow up apt for a week later... Which 9 out of 10 times they're better by and I'm not out several thousand more dollars for the hospital stay but none the less we had to have " the fight "

 

[Iamqueenofeverything]

your experience is what i am looking for. every visit seems to be a stressful event because of something i said in earlier post or like what you go through. i am thinking why does every visit have to end up in with something gone wrong or i have to be on top of a situation or whatever. doctor visits should be a simple thing but they are not and they should cause stress when people are sick.

 

[bloggymom]

Having same problems for the past few years. I finally changing docs.... huge change. Added a new general practitioner to my care team and things are going tons smoother... she acts as an advocate and a buffer. New doc visits are quicker and smoother. New docs only see a certain number of patients a day less waiting and doc spend more time with me....SWEET!! Plus they send me all necessary paperwork before appointments.

 

[Ratatosk]

We used to have issues with our local cf clinic and decided to just stop going there. We still see the head of the clinic who is ds' pediatrician, but our primary cf care is in the City about 250 miles away. The local CF clinic was a nightmare. Tiny waiting room full of patients. Private exam rooms weren't assigned, instead patients went from room to room to meet the specialist -- we were told it was "okay" because no one at the clinic had ever cultured cepacia. The pulmonologist was always criticizing us -- telling us we didn't have to do cpt or nebs unless symptoms occurred "besides there've been great strides made with lung transplants". As if we could just go to "Lungs R Us" and pick up a pair. DS was 3 months old at the time. There was a laundry list of don'ts -- basically he told me I should stay home with DS, he shouldn't be involved in sports or activities. The GI specialist told us we didn't need to give DS any extra calories, he'd eat when he was hungry. We barely maintained a 50th percentile with feedings every 3 hours. When I asked about a liver test, recommended by the CF clinic in the City -- he mimicked me and asked why we'd want to test for that. Add to that being made to cool our heels in an exam room for an hour and a half before seeing anyone, then waiting 20-60 minutes for each subsequent specialist... Made for a very long day. If you're unhappy, an unable to change the situation, IMO, it's time to go elsewhere, which is exactly what we did.

 

[azdesertrat]

Man, reading about these doctor visits makes me glad my doctor visits really are bordering on pleasant. When I go to my CF doc, I talk with his nurse for a bit first. She is one of the most helpful people on my Medical Team. I can't say enough good things about her. Then I talk to my Social Worker. She is quite helpful. She gives me tips on how to negotiate payments with hospitals & doctors. Then I talk to my Dietician. She gives me pointers on how to gain weight. Last on the list is the Doc. I love my CF doctor. He kept me alive long enough to get my transplant & he is still always there for everything post-transplant. The only problem I have with anyone on my Medical Team is with my Transplant Team. My Transplant Team was real good pre-transplant but post-transplant care is almost non-existent.

 

[nocode]

I also feel lucky about my appointments. I always have a lung function test scheduled, followed by an appointment with the doctor to discuss the results and general stuff about the condition. I'm usually in and out of the hospital within 1,5 hours.

 

[occupyjapan]

I go in, nurse who does PFTs gets my height/weight/temp/pulse/ox. I do PFTs for 5 or 10 minutes (I'm a perfectionist, haha). I go into the exam room and wait maybe 5-10 minutes. Doctor comes in, looks at my PFTs; 99.9% of the time remarks on how good/stable they are. Listens to my chest; 99.9% of the time remarks that it sounds totally clear. Looks in nose for nasal polyps; never finds any. Asks if I need any refills; does those if need be. We talk about CF stuff for 10 minutes or so (new drugs, clinical trials, whatever). He gives me my lab order if need be; I go and do those which is another 5-10 minutes as the lab is just down the hall from the exam room. After that, I say goodbye to everyone and leave. I am generally out the door in 45 minutes or so. I don't say this to brag, but because I really empathize with how awful it must be to have every appointment feel like such a hassle, especially when you aren't feeling very well. It makes me feel very lucky (and guilty, somewhat) that my own appointments are such smooth sailing most of the time.

 

[rmotion]

[One thing that helps is if you are a compliant patient or at least trying to be. From the docs perspective I am sure CF is a crappy disease to treat. I am sure they want better tools to treat us and it must be frustrating to only have a hammer as a tool. If we do not do our treatments then they get to blame you as the culprit of your condition, not them. We all struggle with CF and have issues that are just tough to deal with, I go home from clinic frustrated and disappointed too. So try the perspective of being thankful and grateful and see what happens.

 

[scarecrow]

To anybody reading this, I hope it doesn't come out the wrong way, but I absolutely refuse to be a COMPLIANT PATIENT. Nobody knows my body or cares what happens to me as much as I do. I do tend to alienate most doctors because I won't just do what they tell me to do. I am pretty intelligent and have been around CF circles for 50 years. Not many Drs. can say that.

When I was first diagnosed w/ CF the only anti-biotic was Pennicilin and Pseudemonas was just called Staff infection. There were no enzymes that really worked and my parents were told that I'd probably never live to be a teenager.

What I'm trying to say is that I have survived by staying out of hospitals and by listening to my body and doing the things that worked for me. Some things Doctors have been very helpful with and when you finally need one you REALLY need one. But doctors look at you from a different view than you look at yourself. They care about you sure, but their outlook is a medical one not a survival one. Much more emphasis is put on treating symptoms than on the LONG VIEW of what the rest of your life is going to be like.

 

[hannahj1d]

Wow, reading these makes me love going to the doctor. As a young teenager I always had long 4-5 hour visits with a "fight" solely because I was that an uncompliant teenager. Now however, my visits usually last around 2-3 hours, I go in and see the nurse practitioner first, she is kinda so-so as she is helpful and very good and hearing what I have to say but I don't get a lot of feed back from her. Then I take my PFT's this is the most helpful part for me because my pulm lady is WONDERFUL she really is the soul of my care team and the doctor himself will say that. She tells me how to improve on my chest physio, and things of that nature but also asks how i'm doing in other areas and is generally very understanding of how (my personal) CF relates almost completely to my lungs and how life affects that and the choices I make, she is not just a stickler for lung talk. My dietician then comes in and tells me to gain weight (what else is new? ). The social worker is also very nice she gives me great advice on how to handle insurance/becoming independent in paying my own doctor bills etc. But as she is concerned that I work/go to school too much she is kind of condescending as to the fact that there is absolutely no way I work nearly full time and go to school full time and fit in my cf things. However I end with the doctor and he is great, he is very understanding of how I think I should be treated medically and will also take the time to break down every little detail of soemthing if i'm not quite sure why we're starting a new regime or how something in the future can change this. I.E my mom has ALWAYS worried about lung transplant, unlike me she is very worrisome and unfortunately looks at the negative aspects of the future and he came in and explained it down to the core what would happen, when, how, why etc, etc, aslo explaining that I am not even close to being a candidate and hopefully never will be.

 

[ymikhale]

I definitely feel your pain even though my dd's visits were like a fight (and still sometimes are). I am used to being really involved in my dd's care and having a kind of dialogue and exchange of ideas is quite natural to me. Here in France doctors are looked upon as Gods and are not used to that kind of attitude, so very often I have trouble getting the doctor to listen to me. It eventually got better, I nowdays phrase my ideas as questions, so that she feels that it was her idea, last time she even took an article I brought (that I got on this forum, so thanks a lot guys). Just to make you feel better, here there is no (easy) option to change doctors or clinics, you are not a client, even more so when you are in the best hospital as we are.

 

[MotherofCFBoy11yrs]

I've had mixed results with trying getting doctors to listen to me. Fortunately my son's first doctor in Australia was open minded and his ego could take a mother who wanted to actively influence the treatment. We've moved since to Europe and where we live now it has been very hard to get through to doctors, they are very sensitive about their position and authoritarian. I've actually come to the point that I'm trying to organize things so that part of my son's care is carried out remotely in another country... hopefully the EU cross-border healthcare directive will gradually make patients' freedom of choice a bit easier.

 

[Printer]

I am 73 and obviously had CF for all of my life. I'm pretty well educated, with two college degrees. I am amazed by the people here who think treating CF is a Democracy, everyone gets a vote. It is not.

I do have long discussions with my CF Doctor about my treatments but he has the final word, that is why I have a CF Specialist treating me. Almost two years ago, I changed CF Centers because of the lack of communication with that Doctor. Communication is one thing, treatment is another.

Recently, I was at the CF Clinic with my Doctor when a second Doctor came into the room. The second Doctor was on a Fellowship and studying CF. Now understand that I am very knowledgeable on the subject of CF. When these two Doctors got into the "mechanical details" or "scientific details" of CF, they may as well have been speaking a lost version of Roman Latin.

If I needed to have my ignorance of CF reinforced, I got it that day.

God bless you and especially your poor child, if you think that you have any more than a passing knowledge of Cystic Fibrosis.

Bill

 

[MotherofCFBoy11yrs]

Hi Bill, in the country where we live now there are no CF centers, because CF is so rare here. However, there a number of excellent CF centers in Europe which have published articles about how they treat CF, it's not rocket science. The treatment approaches vary a lot between countries and even between centers, and so do the outcomes. The great thing about the new EU cross-border health directive is that it will become easier for CF patients to use health services in other European countries, and the cost should not be more than what they would pay in their own country.

In my son's case we see the doctors maybe twice a year, and apart from blood tests it is more a formality in terms of what they do (he is well). In his case the most important thing is to have his sputum tests regularly examined in an expert lab and in getting any bacteria treated appropriately, so we need prescriptions. As of next year prescriptions are EU-wide. We can mail the sputum samples and prescriptions can be faxed. I'm in the process of trying to figure out how his local and remote care can be put together and what to do if he ever needed IV antibiotics.

 

[Printer]

There are about 2000 known mutations. Given that it takes two mutations to cause CF, there are 4,000,000 possible combinations. Therefore 4 million different versions of CF. Allowing that, 70% of the CF population has at least one copy of the Delta F508 mutation, that means that there are 1,200,000 CF patients that are not affected by the most common mutation.

When I say 4 million possible combinations, I am lightly skipping by the fact that patients with the same identical mutations, can and do, suffer from CF differently. Actually, identical twins with the same mutations can have severely different "versions" of CF.

Proper medical treatment of Cystic Fibrosis is not a mail order, one size fits all situation.

In the US, we see a CF Team, composed of a CF Specialist, and several other medical specialists.

Medical treatment for CF, done properly, is "Rocket Science" and more.

 

[Jennyvb17]

Maybe I'm wrong, but besides the vortex drugs, treatment isn't based on your genes.
Symptoms aren't even based on your genes.

Besides that, I think you are correct, there is a reason we have doctors monitoring us. They understand the underlying implications of treatment. There is scientific backup to why they do it a certain way. My doctor will do something th European way if it works better for me (taking 250 Zithromax everyday, instead of 500 three days a week. Because I had a hard time remembering to so it 3 times a week)

Just saying there is a reason you are just a mom and he is just a doctor

 

[Printer]

Jenny:

My second mutation (V562I) is very rare. This mutation means that my lung function is still pretty good. Most of my issues are below my lungs.

Mutations are important in treatment.

Bill

 

[windex125]

I have had a problem posting since the format has changed. I wrote on this subj and it did not come thru.. what am I doing wrong Printer I look for yr. postings as you and I are up there in age. Is anyone else having a problem posting? windex125/ Pat-CF/58